When Grief Finds Oxygen
A version of this essay will soon be published by Still Here Magazine
My grief journey continues to evolve, as people warned me it would. When Declan first died, I think I was in shock. I was numb. People would cry and bawl their eyes out in front of me... and it made me uncomfortable. Because wasn’t I supposed to be the one falling apart? He was my son.
I don’t think that word was chosen randomly. Son. Sun. The center of your universe. The light that gives you warmth, comfort, and joy. All three of my boys are my suns. They have been the center of my world and life since the day I became a mother. And then I lost one of them.
Declan became my identity as well. I quit job after job to care for him. I became his advocate, his backup and primary nurse, his care coordinator. I was his protector, guardian, and cheerleader. He took up so much space - mentally, physically, emotionally - that the absence of him echoes. It echoes in empty closets that used to be filled with medical equipment and supplies. In the quiet mornings when he would have been announcing his presence with beeping machines or silly singing. And even in the restful nights. When I wake up after sleeping a full night with no interruption, I first feel relieved, and then guilty.
My grief lately though has morphed. It’s no longer numb, and I no longer look upon others’ tears with discomfort. It’s become raw. I find myself wanting to tell the funny stories about him, like when he started stripping the moment he walked onto a pool deck, somehow thinking he was going to dive right in, despite the trach, despite not knowing how to swim. Or how he was adamant that he was going to join the Minnetonka Sparklers when he hit high school (the special ed cheer squad). Or how he embarrassed his brother wearing princess jammies to Nash’s soccer games. And then sometimes I find myself crying as I tell these stories.
I also find that I’m learning the true complexity of grief. That it isn’t just tears or missing him. That my entire emotional landscape is being recalibrated. Emotional slights hurt more now. A lot more. I have an even lower tolerance for injustice and exclusion. My boundaries are more clear, and emotional bandwidth is reduced. If we interact on a casual basis, you’re likely to think that nothing is wrong. I can talk about my son and smile as I do. I cry over him less than I expected. But I feel everything else more. Grief isn’t just sadness. It’s a full rewiring.
After we got his soil back, we went as a family to pick out our ‘Declan plants’. I had planned on specific plants that are supposed to be very easy to keep alive but saw another that he would have loved. Its pink. It’s beautiful. It’s so Declan. I had to get it. I promised myself and Nash that I would try very hard not to kill it. But I could see Declan in that greenhouse. He wouldn’t care at all about anything else there, but if he’d seen that pink plant, he’d have picked it up and tried to walk off with it. I laughed at the image and cried for his absence.
My tears do flow more freely now, at least when I’m in an emotionally safe space. And I believe it is partly because the initial relief of the escape from the life of caregiving has eased. I’ve been able to stop and just breathe for a few months. Nothing has been life or death. My interactions with the pediatrician’s office have been normal questions and checkups. Our home is no longer a revolving door of nurses and therapists. Now? I just miss him.
